Rett Syndrome-Rebecca Guerrero

a. How does it feel to be the parent of your child?

When my husband and I first found out about Amy's disorder, we were very upset.  Amy was born a healthy baby girl and suddenly 6 months later, we were told she would not be able to function without complete support from us.  Because of the disorder, Amy has severe breathing problems, seizures and loss of most fine motor skills making it impossible for her to participate in most activities.  Realizing that our child will never be able to play in a soccer game or participate in the school's spelling bee is still very hard for us to accept at times.  However regardless of any disability our child may have, we feel incredibly lucky to have her in our lives.  She has taught us to appreciate the little things that we previously took for granted (our ability to enjoy a meal, our ability to socialize with others, etc.) and the true quality of life that we enjoy.  While it is difficult for us to consider the fact that we will probably have to bury our own child (life expectancy is about mid 40's), we try to live in the moment and appreciate the precious time we still have with our Amy. 

b. How is your child developmentally the same or different from other children at the various ages?

Developmentally wise, Amy is unable to socialize with others due to major difficulties with language development.  Unfortunately, hand movements are also extremely minimal due to a tendency she has to repeat hand motions (most of the time, her hands are in her mouth) making it nearly impossible to communicate with her.  She suffers from seizures so we keep Amy in a home-school program that combines visual, audio, and kinesthetic activities to help engage her as much as possible.  Amy is unable to walk, eat or use the bathroom by herself so we are with her almost 24 hours of the day.  As far as height and weight comparisons, Amy is far below the average so we keep her on a diet that is rich in calories and fat (most children's dream!). 

c. What professionals/agencies do you deal with?  What services are available to you and your child?

There are a great deal of support groups that my husband and I are a part of that help keep us connected with other families that have children with Retts.  The IRSF (International Rett Syndrom Foundation) is one of the main resources we are constantly accessing due to their abundance of resources at our constant disposal.  Their online website provides helpful articles that keep us up to date with recent testing being conducted as well as support groups that are available for us to join.  The family feel that is created with services such as this make us feel like we are not alone while providing helpful tips and personal stories that can help make Amy's life that much easier and richer.  RettNet is another favorite spot of ours (also accessible through the IRSF website) because of the open discussion that is available for us to share our honest thoughts, struggles, and opinions with others in the same position as us. 

d. How did you find out about the above services?

We heard about IRSF from Amy’s developmental pediatrician who gave us a list of helpful websites we could check out to help get Amy the best possible services available.  The discussion boards available on this website opened numerous other doors to our family and we now participate in a great deal of fundraising events to help promote awareness of Rett Syndrome as well as celebrate our children for what they contribute to our lives.  These are a few of our favorite online services:

·         http://www.rettsyndrome.org/ (This website offers a great deal of information regarding characteristics and current research being conducted on Rett syndrome.  A multitude of discussion boards and blogs are also available for us to access at any time.)

·         http://www.dailystrength.org/c/Rett-Syndrome/support-group (This website is a popular support group that we access.  The blogs and responses are very helpful!)

e. What financial burden, if any, are you experiencing?

Because Amy is our only child, we do not really experience the stress of a financial burden.  I do not work due to the necessity to be with Amy nearly 24 hours so we depend on my husband for income.  The homeschooling services that we provide for Amy can be a bit costly but every program varies depending on the extent and qualities of the services provided.  We also have enrolled Amy in a physical therapy program to help keep her muscles strong and improve her scoliosis; luckily this service is included in our insurance.  Amy’s doctor visits and medications are quite extensive due to her condition (she relies on a feeding tube, is prone to seizures, and needs assistance using the bathroom) which can be costly but again, our insurance covers the majority of these expenses. 

f. What other information do you want to share?

This disorder has been extremely hard for my husband and I to handle due to the ebb and flow of the condition.  Most individuals, like our Amy, go through multiple stages that afford and retract certain abilities of our child.  For example, while Amy has begun to demonstrate communication with us, we are told that she will most likely lose this ability as time continues.  The same is true for many others in terms of the ability to walk and alertness.  Involving ourselves and Amy with others that have similar conditions helps us to realize that we are not alone.  We love our child and appreciate her greatly for how much she has enriched our life.  While at times we struggle with thinking about what she is missing out on, we quickly remind ourselves of all that she is still able to do. 

Becky's glogster:  http://mtnclmber7.glogster.com/rett-syndromemy-exceptional-child/